After I was released from the hospital for the blood infection, I was more concerned about my health than ever. My "Monster" was causing so much chaos in my body, yet it was being very sneaky and playing "Hide-and-Seek" with the Doctors. I was determined to find out what was wrong with me, so determined that I would have tried anything, and I almost did.
I was 19 at the time, and all I wanted was to be normal like everyone else.
I had been meditating on my pain for years now, sitting quietly on my bedroom floor, closing my eyes and trying to locate where the pain was. After some practice, I could see my body in my mind's eye and the painful areas would light up, almost glow. I knew that more than one area hurt. After the laparoscope was done a year before, the pelvic pain was completely gone. The endometriosis was the source of it. But I still had to figure out what was causing the pain above my belly-button, in my lower back and abdomen. One down, three to go.
I couldn't wait for my Doctor to believe me. I had to search for the answers on my own. The pain was almost unbearable, yet I wasn't given anything for it because "pain medication won't help pain that is all in your head". I took out books from the library and tried to teach myself Biofeedback techniques to try to desensitise myself to the pain, but I found it almost impossible to do. I decided to look into some unconventional healing methods. I was one hundred percent sure that my digestive tract was the source of most of my problems due to the pain being worse after eating, and having everything that I did eat go right through me. I was desperate and under ninety pounds. If I could have somehow found a way to help my symptoms I would have been so incredibly happy.
I started with buying some Healing Crystals and a book about them. Supposedly if you put the right type of crystal on the proper place, the power of them can heal what ails you. Every night for months, I would lay on my bed with the crystals all over my body, listening to a Relaxation CD of the sounds of the ocean. I also carried them in a pouch around my neck for further protection during the day.
My Mom came into my room to say good night to me one evening, and found me covered with my crystals. I think it was then that she realized that I was really suffering since I was trying to heal myself in private, if I had been faking I wouldn't have been trying to cure myself, or keeping up the pretense while I was alone. Until then she hadn't believed that there was anything wrong with me either. She had been seeing a Chinese Herbalist for some health issues of her own and suggested that I go see him too. I figured it wouldn't hurt and that maybe a new set of eyeballs on the situation could get to the bottom of things. That was a really interesting experience. He did a complete exam and thought that my pancreas was sluggish or that a duct leading to it may be blocked. He wanted to strengthen and unblock the flow of my "chi", which is the life energy of the body. Accupuncture was done three times a week, and he made up herbal tea packages for me to drink. They contained dried barks, mushrooms, leaves and berries. I boiled the herbs in a pot until there was only a half a cup of liquid left, actually saying liquid is being generous, it looked more like sludge and tasted just about how you would imagine sludge would taste, YUCKY! I couldn't believe that I was paying someone to make me drink that foul-flavoured mixture. By the time that I was supposed to show signs of improvement I hadn't felt any better so I moved on.
These treatments help many millions of people around the globe everyday, and I would highly recommend anyone that is not getting the help they want or need from Western Medicines, or want their treatment to have a more holistic approach to consider using these techniques.
The hunt was on again for answers. I never stopped going to my Family Doctor and pleading with him to help me, but a frustrating cycle would occur. The more tests I asked him to requisition for me, the more the results would be returned normal, and the more he would believe I was a hypochondriac, so I continued down the road with Alternatives. First I went to a Naturopathic Doctor and learned how to improve my diet and was introduced to some botanical medicines. They deal more with symptoms and the body as a whole.
I also had appointments with an Iridologist. They look at and analyze only the iris to detect health issues that you could have now, or that could possibly occur in the future. A picture of your iris is taken and turned into a slide. To see your five or so foot tall eye blown up on a wall is quite the experience, let me tell you! Mine looked kind of like a blue cratered surface of the moon! When reading the slides they can tell many things from the flecks, density of the colour and locations of different markings. I had a gold fleck that was called a "Mother's Jewel". The appearance of this fleck is supposed to mean that your Mother is very caring, worried and concerned about you. This shocked me and made me feel defeated all at the same time. It was like going to a psychic but realizing that they are only telling you what you want to hear. I didn't believe that about my Mom at first. Why would she have been worried about me if she thought that I was faking it or a hypochondriac? But then I looked at her as she was sitting beside me, and she was nodding "yes" at me with tears in her eyes. I never doubted her belief in my pain again, and I never loved her that much as I did in that moment.
Showing posts with label crohns. Show all posts
Showing posts with label crohns. Show all posts
Sunday, July 4, 2010
Monday, June 7, 2010
It's Complicated
I didn't end up having my colonoscopy on friday. I drank half of my prep like I was supposed to, and had every intention of getting up early the next morning to drink the other half. But sometimes things have a tendancy of not working out the way we want them to.
I could feel the familiar rumbling in my belly, but I also felt a nagging nausea and that made me nervous. After downing that horrible stuff, eight ounces every ten minutes for two hours, the last thing that I wanted was to feel like it was going to come back up.
I'm sure that I'm not the only Crohn's patient that has certain traditions that they keep for the day and night before a colonoscopy. I always set up the bathroom with things to keep me occupied like books, games and my Journal. I was writing an entry when I started to feel horrible abdominal pain and a migraine coming on. It kept getting worse, and worse so at first when I threw up I was happy because the pressure in my head subsided. But then I realized what was going on and I was not a happy camper at all.
I have had over ten surgeries so I have a lot of scar tissue, adhesions as they are called. Every time that I get cut open my scar keloids, this is when it becomes wider and thicker than normal. Inside my abdomen the scar tissue attaches itself all over the bowel, other organs and to the peritoneum, the lining of the abdominal cavity. These adhesions have caused bowel obstructions before and I knew that was what was happening again. The scar tissue is sticky so it makes the bowel stick to itself, or it wraps around the bowel cutting off the passageway, and potentially the circulation. This is one of the complications of having surgery. I have had to have emergency surgery for this before because the circulation was cut off. If the blood can't flow through the bowel, it will die and eventually cause gangrine, which causes blood poisoning that could lead to death.
I knew that it was only a partial obstruction due to the fact that things were moving out of both ends. If I was only vomiting I would have been way more concerned. If this ever happens to you, DO NOT think that it will just get better on it's own or that you can take care of it on your own, go straight to the hospital. Most likely you will need a naso-gastral tube inserted into your nose to suck out the fluid which eases the pressure off of the obstructed area. It is highly uncomfortable but helps to eleviate some of the pain. Most of the time with bowel rest, no food or water, the obstruction will loosen on it's own, only when it doesn't will they operate and go in to cauterize, or burn off the adhesions. This is one reason that surgery is always the last option, because every time they operate, adhesions can form, so having the adhesions cauterized can just cause more adhesions. It's a very vicious cycle.
I have been through this many times and know what to do to help the obstruction resolve itself, so I didn't need to stay in the hospital, also it was a partial obstruction so I didn't need a tube. If it had progressed, I would have been right back up to the hospital begging them to admit me.
It is now Tuesday and I am feeling much better, also my colonoscopy has been re-sheduled to take place in August. If you have any questions about complications of any kind I will be happy to answer them. And I hope you never have any yourself.
I could feel the familiar rumbling in my belly, but I also felt a nagging nausea and that made me nervous. After downing that horrible stuff, eight ounces every ten minutes for two hours, the last thing that I wanted was to feel like it was going to come back up.
I'm sure that I'm not the only Crohn's patient that has certain traditions that they keep for the day and night before a colonoscopy. I always set up the bathroom with things to keep me occupied like books, games and my Journal. I was writing an entry when I started to feel horrible abdominal pain and a migraine coming on. It kept getting worse, and worse so at first when I threw up I was happy because the pressure in my head subsided. But then I realized what was going on and I was not a happy camper at all.
I have had over ten surgeries so I have a lot of scar tissue, adhesions as they are called. Every time that I get cut open my scar keloids, this is when it becomes wider and thicker than normal. Inside my abdomen the scar tissue attaches itself all over the bowel, other organs and to the peritoneum, the lining of the abdominal cavity. These adhesions have caused bowel obstructions before and I knew that was what was happening again. The scar tissue is sticky so it makes the bowel stick to itself, or it wraps around the bowel cutting off the passageway, and potentially the circulation. This is one of the complications of having surgery. I have had to have emergency surgery for this before because the circulation was cut off. If the blood can't flow through the bowel, it will die and eventually cause gangrine, which causes blood poisoning that could lead to death.
I knew that it was only a partial obstruction due to the fact that things were moving out of both ends. If I was only vomiting I would have been way more concerned. If this ever happens to you, DO NOT think that it will just get better on it's own or that you can take care of it on your own, go straight to the hospital. Most likely you will need a naso-gastral tube inserted into your nose to suck out the fluid which eases the pressure off of the obstructed area. It is highly uncomfortable but helps to eleviate some of the pain. Most of the time with bowel rest, no food or water, the obstruction will loosen on it's own, only when it doesn't will they operate and go in to cauterize, or burn off the adhesions. This is one reason that surgery is always the last option, because every time they operate, adhesions can form, so having the adhesions cauterized can just cause more adhesions. It's a very vicious cycle.
I have been through this many times and know what to do to help the obstruction resolve itself, so I didn't need to stay in the hospital, also it was a partial obstruction so I didn't need a tube. If it had progressed, I would have been right back up to the hospital begging them to admit me.
It is now Tuesday and I am feeling much better, also my colonoscopy has been re-sheduled to take place in August. If you have any questions about complications of any kind I will be happy to answer them. And I hope you never have any yourself.
Wednesday, June 2, 2010
"The Dreaded Prep for the Scope"
As Crohn's patients, we go through a lot. Good, bad and indifferent.
Spending days, weeks and even months at a time in the hospital teaches us patience, that's a good thing. Being thankful for good days, and making the most of them, empathizing with others that suffer, and learning to listen to our own bodies are also all very good.
But the Colonoscopy, that falls under the bad category.
It's not the test itself, that's a breeze. The humiliation of having a tube inserted into your butt in front of a doctor and nurses, is greatly reduced by the medications that are given by i.v., weakening our defences and cares. Most of the time, thankfully, we don't remember much of it at all. The pain experienced during the test, thanks again to the medications, becomes part of a very distant memory.
The inhabition that the medication can create has been comical to some present in the past for me. When I was diagnosed, I was very blessed to have an extremely good looking Gastro. that I had a secret crush on. My Mom and friends knew about how I felt, but I certainly didn't want him to find out.
Under the influence of these medications during a Colonoscopy, I guess I changed my mind and told him that I was in love with him! When I woke up in Recovery the nurses told me about it and I was mortified! Then he came into the room and neither of us would look eachother in the eye. It was so embarassing! He was my doctor for close to 20 years, and I said stuff like that everytime. He was such a good sport about it and never mentioned any of it to me, but the nurses rubbed it in any chance they got! LOL!
Now for the worst part, the prep. Drinking litres of a salty based, slightly thick, clear liquid, that DOES NOT taste better cold, like they tell us it does, within a small, set period of time (... oh, it is just the worst tasting stuff created by man!) is such a horrible experience for me, that I actually have small panic attacks in the days leading up to having to drink it.
In the past when I have been in the hospital having tube feedings, they would put the prep down the tube, by-passing my mouth. That was great! I wish they could do that everytime. The stuff has such a negative effect on my gag reflex, that sometimes vomiting is inevitable, and then unfortunately I have to start all over again.
How are you with "The Dreaded Prep for the Scope"? If you have any tricks or advice on how to make this a more palatable experience, leave a message, you could help me or someone else that is reading this post. Have you had an embarassing moment too? I'd love to hear about it!
Spending days, weeks and even months at a time in the hospital teaches us patience, that's a good thing. Being thankful for good days, and making the most of them, empathizing with others that suffer, and learning to listen to our own bodies are also all very good.
But the Colonoscopy, that falls under the bad category.
It's not the test itself, that's a breeze. The humiliation of having a tube inserted into your butt in front of a doctor and nurses, is greatly reduced by the medications that are given by i.v., weakening our defences and cares. Most of the time, thankfully, we don't remember much of it at all. The pain experienced during the test, thanks again to the medications, becomes part of a very distant memory.
The inhabition that the medication can create has been comical to some present in the past for me. When I was diagnosed, I was very blessed to have an extremely good looking Gastro. that I had a secret crush on. My Mom and friends knew about how I felt, but I certainly didn't want him to find out.
Under the influence of these medications during a Colonoscopy, I guess I changed my mind and told him that I was in love with him! When I woke up in Recovery the nurses told me about it and I was mortified! Then he came into the room and neither of us would look eachother in the eye. It was so embarassing! He was my doctor for close to 20 years, and I said stuff like that everytime. He was such a good sport about it and never mentioned any of it to me, but the nurses rubbed it in any chance they got! LOL!
Now for the worst part, the prep. Drinking litres of a salty based, slightly thick, clear liquid, that DOES NOT taste better cold, like they tell us it does, within a small, set period of time (... oh, it is just the worst tasting stuff created by man!) is such a horrible experience for me, that I actually have small panic attacks in the days leading up to having to drink it.
In the past when I have been in the hospital having tube feedings, they would put the prep down the tube, by-passing my mouth. That was great! I wish they could do that everytime. The stuff has such a negative effect on my gag reflex, that sometimes vomiting is inevitable, and then unfortunately I have to start all over again.
How are you with "The Dreaded Prep for the Scope"? If you have any tricks or advice on how to make this a more palatable experience, leave a message, you could help me or someone else that is reading this post. Have you had an embarassing moment too? I'd love to hear about it!
Thursday, May 20, 2010
Happy World IBD Week Everyone!
For those of you that don't know, IBD stands for Inflammatory Bowel Disease or Disorder. These include Crohn's, Colitis, Diverticulitis, Irritable Bowel Disorder and others. They are all diseases that deal with the digestive tract causing a range of symptoms, from mild to severe. The main symptoms in common are nausea, vomiting, inflammation and abdominal pain.
I think it's great that these diseases have finally come out of the bathroom and into the light. Twenty years ago when I was diagnosed with Crohn's Disease, I had never even heard the word before. Many people back then and for years before, suffered in silence, embarrassed to speak to their doctors, or anyone for that matter, about their washroom habits. It was only when the disease progressed to require hospitalization or surgery that it was spoken of, and a diagnosis made.
We've come a long way baby!
Today there are tests such as colonoscopies, blood tests, barium tests, X-rays, MRI's and CAT scans that are done when symptoms arise. There are new treatments that work better, with less negative side effects.
There are also associations like the Crohn's and Colitis Foundations of Canada (CCFC), America (CCFA) and other countries around the world that help patients everyday. These foundations and their members put on campaigns such as "The Heel-And-Wheel-Athon" and "The Annual M&M Meats BBQ", to help raise awareness and funds for research to find cures.
Patients can also get involved with the support groups foundations offer, to find and connect with others that cope with the same things, and have the same challenges in common. Groups are so important and positive, in that patients can get together, and know that they are not alone.
Having a "World IBD Week" denotes the strides in awareness that have been made, and the internet has proven to be a major push in the right direction for this movement. Information about all of these diseases are at anyone's fingertips, with the click of a mouse. Social media sites such as Twitter, Facebook, MySpace and others all have groups specifically for patients, their families and friends.
So if you are curious about these diseases, google them. If you think you may have one of them, see your Doctor. And if you know someone that has an IBD, give them a hug! I know they will appreciate it!
I think it's great that these diseases have finally come out of the bathroom and into the light. Twenty years ago when I was diagnosed with Crohn's Disease, I had never even heard the word before. Many people back then and for years before, suffered in silence, embarrassed to speak to their doctors, or anyone for that matter, about their washroom habits. It was only when the disease progressed to require hospitalization or surgery that it was spoken of, and a diagnosis made.
We've come a long way baby!
Today there are tests such as colonoscopies, blood tests, barium tests, X-rays, MRI's and CAT scans that are done when symptoms arise. There are new treatments that work better, with less negative side effects.
There are also associations like the Crohn's and Colitis Foundations of Canada (CCFC), America (CCFA) and other countries around the world that help patients everyday. These foundations and their members put on campaigns such as "The Heel-And-Wheel-Athon" and "The Annual M&M Meats BBQ", to help raise awareness and funds for research to find cures.
Patients can also get involved with the support groups foundations offer, to find and connect with others that cope with the same things, and have the same challenges in common. Groups are so important and positive, in that patients can get together, and know that they are not alone.
Having a "World IBD Week" denotes the strides in awareness that have been made, and the internet has proven to be a major push in the right direction for this movement. Information about all of these diseases are at anyone's fingertips, with the click of a mouse. Social media sites such as Twitter, Facebook, MySpace and others all have groups specifically for patients, their families and friends.
So if you are curious about these diseases, google them. If you think you may have one of them, see your Doctor. And if you know someone that has an IBD, give them a hug! I know they will appreciate it!
Saturday, May 15, 2010
Gut Instincts (cont)
Back to "Gut Instincts":
After getting nowhere with that doctor, my family decided to switch to a new family doctor, and I was ready for a real diagnosis. No jokes, just facts. I just wanted to be, and feel normal again.
I was losing weight rapidly, was nauseous all the time, had diarrhea multiple times a day, and the pain was getting worse. I was told to quit my dancing lessons and gymnastics by my old doctor. I wasn't happy about it, but I just didn't have the energy anymore. I was also having such bad joint pain that I was finding it all very difficult anyway.
I left my first appointment with the new doctor, had some blood drawn and x-rays and was hoping that he would be the answer to my prayers. But he didn't help either, he thought that I was a hypochondriac, or that my symptoms were just psychosomatic. And because he was an M.D. and didn't think anything was wrong with me, my friends and family decided that he was probably right. That didn't sit very well with me, they treated me like I was crazy and just making it all up.
High School was ending, and I was working two jobs. I was getting worse and kept going back to see the new doctor over and over again, but nothing changed. At one visit my doctor was away so I saw one of his partners instead. I thought maybe he would have some new ideas. Oh, he had ideas alright, he told me all I really needed was a good shrink! and he gave me a script for some antacid. Really helpful, not.
When my doctor got back, I went to see him again, and told him that I really believed that there was something inside of me that wasn't supposed to be there. I told him that I wanted to go and get an Anatomy book, cut myself open, and remove the object of my pain. He looked at me like I was nuts and just sent me for more blood tests which came back negative for everything.
Because of my weight loss, anorexia was brought up. I knew that wasn't the problem. I swore up and down that I wanted to eat, was hungry, but it just hurt too much every time I ingested anything.
I started smoking pot to help with the pain, especially at bedtime because the pain would wake me up so many times during the night, that on top of being drained, and feeling weak from not eating, I was exhausted from being up and down all night.
I graduated from high school, got a new job with an Engineering firm and quit the other two. The company was owned by a friend's Dad and I loved it there. I should have been healthy, happy and enjoying my new life.
But with friends, my boyfriend, my family and my doctor thinking that I was faking my pain, I started to doubt myself at times and wondered if I was just imagining it all, or maybe not taking care of myself properly. That was really hard, thinking that I was doing something to cause this all to happen to me. I decided to make some changes to see if they would help.
I started running again, that had always been one of my favorite ways to get exercise. I started to make healthy lunches (and making myself eat them) to bring to work with me instead of going to the fast food places with co-workers. After a couple of months of implementing these changes I was feeling worse. The pain was increasing and I was literally spending hours a day in the bathroom with diarrhea.
This was a really hard and lonely time for me. No one wanted to hear about my pain and other symptoms anymore. Some friends stopped being there for me. I would sit cross-legged on my bedroom floor and meditate on the pain and it's location. The worst pain was in my lower back, just above my belly button and in my lower pelvis. I had been doing this for months and I really could feel like there was a foreign object inside me that needed to be removed. I knew that I wasn't crazy or imagining it. I knew that there was something really wrong and I wasn't going to stop bugging my doctor until we had answers. I was going to listen to my "Gut Instincts"!
I decided that I just wouldn't talk about it anymore, and no matter how I was feeling I would pretend that I felt great. It was very stressful, and I would cry myself to sleep some nights praying for God to either heal me or let me die so that I wouldn't have to suffer anymore.
After getting nowhere with that doctor, my family decided to switch to a new family doctor, and I was ready for a real diagnosis. No jokes, just facts. I just wanted to be, and feel normal again.
I was losing weight rapidly, was nauseous all the time, had diarrhea multiple times a day, and the pain was getting worse. I was told to quit my dancing lessons and gymnastics by my old doctor. I wasn't happy about it, but I just didn't have the energy anymore. I was also having such bad joint pain that I was finding it all very difficult anyway.
I left my first appointment with the new doctor, had some blood drawn and x-rays and was hoping that he would be the answer to my prayers. But he didn't help either, he thought that I was a hypochondriac, or that my symptoms were just psychosomatic. And because he was an M.D. and didn't think anything was wrong with me, my friends and family decided that he was probably right. That didn't sit very well with me, they treated me like I was crazy and just making it all up.
High School was ending, and I was working two jobs. I was getting worse and kept going back to see the new doctor over and over again, but nothing changed. At one visit my doctor was away so I saw one of his partners instead. I thought maybe he would have some new ideas. Oh, he had ideas alright, he told me all I really needed was a good shrink! and he gave me a script for some antacid. Really helpful, not.
When my doctor got back, I went to see him again, and told him that I really believed that there was something inside of me that wasn't supposed to be there. I told him that I wanted to go and get an Anatomy book, cut myself open, and remove the object of my pain. He looked at me like I was nuts and just sent me for more blood tests which came back negative for everything.
Because of my weight loss, anorexia was brought up. I knew that wasn't the problem. I swore up and down that I wanted to eat, was hungry, but it just hurt too much every time I ingested anything.
I started smoking pot to help with the pain, especially at bedtime because the pain would wake me up so many times during the night, that on top of being drained, and feeling weak from not eating, I was exhausted from being up and down all night.
I graduated from high school, got a new job with an Engineering firm and quit the other two. The company was owned by a friend's Dad and I loved it there. I should have been healthy, happy and enjoying my new life.
But with friends, my boyfriend, my family and my doctor thinking that I was faking my pain, I started to doubt myself at times and wondered if I was just imagining it all, or maybe not taking care of myself properly. That was really hard, thinking that I was doing something to cause this all to happen to me. I decided to make some changes to see if they would help.
I started running again, that had always been one of my favorite ways to get exercise. I started to make healthy lunches (and making myself eat them) to bring to work with me instead of going to the fast food places with co-workers. After a couple of months of implementing these changes I was feeling worse. The pain was increasing and I was literally spending hours a day in the bathroom with diarrhea.
This was a really hard and lonely time for me. No one wanted to hear about my pain and other symptoms anymore. Some friends stopped being there for me. I would sit cross-legged on my bedroom floor and meditate on the pain and it's location. The worst pain was in my lower back, just above my belly button and in my lower pelvis. I had been doing this for months and I really could feel like there was a foreign object inside me that needed to be removed. I knew that I wasn't crazy or imagining it. I knew that there was something really wrong and I wasn't going to stop bugging my doctor until we had answers. I was going to listen to my "Gut Instincts"!
I decided that I just wouldn't talk about it anymore, and no matter how I was feeling I would pretend that I felt great. It was very stressful, and I would cry myself to sleep some nights praying for God to either heal me or let me die so that I wouldn't have to suffer anymore.
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